Diagnosis Redemption

When our children came to live with us, we learned about despair. Loss. Grief.

Theirs, not ours.

Our son, then five, woke up screaming between 3 and 4 am. Every morning.

I dragged my laptop (and myself) into his room each time, sending email and running searches. As long as I sat in the room—near the bed but not touching him—with lights on, he slept. Or appeared to sleep; if I left my assigned location, he screamed again.

We couldn’t touch him.

The rare exception was during the screaming fits, when he clung to me like an underfed, sleep-deprived monkey.

He never looked anyone directly in the eye.

He scooted himself underneath any cave-like spot. At our church, they learned to leave him there until he came out on his own. A children’s church volunteer sported a nasty shin-bruise after getting too close.

His first reaction when feeling threatened: lash out, duck under or climb high.

Boy, could that kid climb. High and fast. Still can, actually.

No bad people can get you if you’re thirty feet up a tree.

He couldn’t wear any clothing with texture. Soft cotton, no tags. Couldn’t eat mashed potatoes without gagging. Anything soft or mushy? No way.

I told the social worker about my concerns. Could this be Autism?

If you’ve read many of my earlier posts, you probably know…our SW was a real gem. (Yes, that’s sarcasm.) She suggested that if we couldn’t handle the children’s issues, social services would kindly remove them from our care.

Threats of removal were, in fact, her only response to my requests that our situation be evaluated for additional training and support as a Therapeutic Foster Home.

At five, he knew only a few letters of the alphabet and exhibited delays in speech and gross motor skills. I contacted the local Children’s hospital about therapy. Ah, the waiting list.

He was so afraid of the other children in his Kindergarten class. Unfortunately, when threatened, his stunted social ability limited him to only a few options: fists, feet and head.

Finally, after six months of driving to the school almost every day to sit in his classroom (the Principal allowed me to stay, considering our situation), the SW approved psychological testing.

This concession came only after multiple attacks on other children in his class and several foiled attempts to escape the school caused the principal to recommend he attend only half-days.

The doctor spent about 45 minutes with him and pronounced his diagnosis as ADHD.

I listed the issues we’d seen in the last six months. “Do you think he could be on the spectrum?”

Nope.

Just traumatized. He’ll be fine in a few months.

Finally, spots opened up in speech and occupational therapy. The therapists agreed with me. ADHD might be part of the problem, but wasn’t the whole story.

A few months before the adoption finalized (and over a year after they came to live with us), I received their full history.

He spoke about ten words when he was three years old. Most of his communication was nonverbal. His behavior was out of control. No one could work with him.

For the next four years, every moment became therapy. We worked on speech, motor skills, interacting with others.

During the school year, they attended our local elementary school (with an IEP). He spent part of his day in the Special Education program. In summer, I homeschooled the two of them, reviewing previous learning and adding more skills. We took time for play and breaks, but most days they spent at least an hour on math and reading.

Beginning second grade, he read on a Kindergarten level. He won a book during our library’s reading program, The Family Secret. I knew the reading level was far beyond him, but the graphic novel nature of the book fascinated him. He became obsessed with the World Wars.

At my aunt and uncle’s house, he discovered war documentaries, mostly in black and white. His obsession expanded to include almost any war. In the bookstore, he begged for coffee-table size books about conflicts in Vietnam and Korea.

And his reading ability exploded. Now in 4th grade, his reading level borders between 5th and 6th grade. He draws elaborate representations of planes, ships and tanks. His attention to detail is unbelievable.

He hears music in his head and recently discovered Beethoven. He’s asking for piano lessons this summer, specifically so he can learn to play the 5th. My mom gave us a set of classical CDs; he vacillates between Tchaikovsky, Schubert and Bach during the day. At bedtime, it has to be Beethoven. And if someone is rude enough to talk during the first movement, we get a rewound encore.

But his social skills are still far behind what they should be. He doesn’t “get” why certain things are inappropriate. He still can’t choke down certain foods or wear irritating clothing.

Once again, I asked his counselor.

Could he be on the Autism Spectrum?

And this counselor, too, who sees him once every two weeks for forty minutes, said, “I think he’s just OCD. And maybe a little eccentric.”

Right. Because “eccentric” is a word we use for nine year old boys.

Finally, I talked him into psych testing. I am not a professional, but I live with the kid. If he’s not ASD, I’m crazy. (Which is likely still the case…)

After the first part, I met with the counselor.

He appeared a bit gobsmacked.

I don’t want to jump the gun, but it appears he could possibly be on the spectrum, based on preliminary testing.

No, really?

A second round, including feedback from his teachers. I asked him to call me with the results.

His secretary called instead; I think he’s mad at me. She was hesitant.

So, his tests show that your son has ADHD.

I almost laughed out loud in frustration.

And he has Autism.

THANK. GOD.

Finally, a diagnosis.

I AM THRILLED.

Now, some of you may question my sanity. Several of my friends have ASD kids and aren’t very happy about the problems ASD brings.

However, for the last several years, I’ve been working more or less alone (as far as therapists and counselors), coaxing therapists into doing things that help kids with Autism even though “he’s not Autistic.”

Finding ways to help him learn.

Explaining to people that he “needs a little extra” when it comes to understanding others—especially other children.

Last summer, he went to a basketball day camp and spent most of the week on the bench (I found out after the fact; he wasn’t forthcoming because he thought he’d be in trouble for acting out). They didn’t give him space to calm himself when he was agitated, which meant he ended up acting crazy.

They saw his ramped-up reactions as misbehavior, when he was just scared and overstimulated. Not their fault either; they’re not trained for special needs. But if we’d had a diagnosis, it might have changed their perception of his actions.

This summer, with the diagnosis, he qualifies to attend a camp for kids on the spectrum, with counselors trained to help him have the most fun possible. If he needs a minute, he can have a minute. No benching. SO. COOL.

And yes, I feel a little bit “told ya so.” I want to call that (no longer working) social worker and give her a piece of my mind.

Sure, lady, he’s just fine. He needs no special accommodations. It’s all in my head. I’m just being hypervigilant.

And when it comes to my kids, I’ll be hypervigilant to my dying day.

Because after the start they had, they need all the help they can get.

Your last several sentences gave me goosebumps! You go Mama Bear! I know how frustrating that can be dealing with so called “professionals” No one knows your kid like you do!! Way to fight for him and I believe that he will climb very high and touch the sky! 🙂